Can anyone recommend a neurosurgeon? Everyone I have seen so far tells me there’s nothing I could do and to just leave it. I’m feeling helpless and scared of a bleed. After reading through countless discussion I feel hopeful that something can be done. I have an AVM on my brainstem.

I was a Brainstem CM. Also originally diagnosed by NEGA Nuerology. I was referred to Dr Barrow. My original diagnosis was untreatable. My best guess is that it’s a scheduling thing. That if you want him and are a less interesting case, you have to be more flexible about when. Your Nuero can set up appointment for you, mine did. After surgery & recovery, I haven’t spoken to him. I don’t know anything about follow ups.

I have seen a number of really good posts in respect to UCLA and Mayo in Minnesota. Trying to recall but believe there was some really positive comments in respect to a hospital in NY, can’t recall which one however. I’m from Canada and was doing a little research in case things didn’t progress here. I was going to potentially head to Mayo, about a day drive from where I am. In my case location mattered for sure.

I’m still alive and well. Mine was a CM not AVM. I feel sure that that would make a difference. Procedure involved a robotic probe that was guided by high definition MRI mapping. In order to proceed I had to have had a bleed that touched the wall of the brain stem. They used this “clot” as an entry point to carterize vessels and suction out matter. Some nerves were permanently severed. Hard to say if I it coincided with surgery or was caused during surgery as I was bleeding at the time.

I wish to add my medical recommendation to the list of people who contributed in this thread to you research for further medical opinions.

My AVM history is this:
I was diagnosed with torcular tentorial region arteriovenous fistula with a cerebellar cortical venous reflux. Had a first embolization done in April 2017 with coils to the venous pouch and a second embolization in May with onyx. Still remained was a tiny area of residual fistula between the torcula and the posterior part of this sausage shaped fistula.

I had gamma-knifed in Nov.1st 2017.
I was appointed to have a follow up session this coming May.

I am Spanish interpreter, profession that demands high levels of concentration to memorize and translate long sentences to conveying the proper understanding into English.

After every intervention I was always felt OK, and I never stop working in my field.
I never bled nor have had other consequences.

I asked the doctors about the possible risks of air traveling, but was allowed to do it.

I live in Ontario, Canada and the excellent team that attended me during the described episodes were leaded by Dr. Michael Cusimano. He works in several hospitals belonging the the University of Toronto Network, however he mainly resides at the Toronto Western Hospital and St. Michael Hospital, both in Toronto.

I hope this reference might help you in your research for more highly qualified opinions.

Sal, we are new to site as of today. I will recommend Dr. Dade Lunsford at UPMC Pittsburgh, PA. First Gamma Knife in US there and he has more experience than anyone in this country. Our son had Gamma Knife there in 1989. We also were able to call various place and send films for opinions back then don’t know if they still do that know. Most major hospitals in US have these machines now. Good luck with your treatment and decisions.
infoneed Ron

late to the show, I had my AVM and epilepsy surgeries at Weill Cornell in NYC. Athos Patsilides is a wonderful Neuro Radiologist and Theodore Schwartz was one of my surgeons. Stephen Karceski was my Neurologist, they were a really amazing team.